Where did everybody go? This place is dead to the world.

I'm here :D

Hey Cybernetic

I think you'd be surprised how many people are just readers. Summertime is a slow time on the boards.

Kevin

Hi there, I'm still here. although my visits are not so often.  I've made attempts to post here but for some reason been having troubles with it.. i've given up trying to post b/c of it.

Hi everyone! I just found you site today and subscribed.

I'm 54 and have had BMD since I was in my early 20's. In the early 80;s I was mis-diagnosed with LGMD but in 2001 I was diagnosed correctly with BMD. (deletion exons 45-47).

GOOD NEWS to those with a similar condition - I'm still able to stand and walk a little (from house to car and around the house). Winter is a big problem with snow and ice. But with some assistance I'm able to get by. I started using a power scooter for longer trips in 2003 when my wife and I visited Washington DC. I would not have been able to do it without.

Until recently (January 2010) I worked full time as a Fundraiser / Administrator. A few years ago I started using a power chair in the office. It just became to tiring to get up and down from my chair.

I'd love to hear from others on the forum and I will be posting more soon.

Gord W.

Hi gord, welcome to the site! thanks for stopping in & saying Hi.. this site has been quiet lately.. but still a great place to connect with others..    my son Nicholas was diagnosed with BMD @ age 7 with the same deletion as yours.. 45-47.  I would luv to hear about your story growing up with BMD,, i'm always interested to hear how others are coping and are dealing with their disease.   bye for now..

take care,

Roxanne.

Hi,

I haven't been on in a long time, but it's good to be back.  My son is about to turn 8 and he also has deletion 45-47.  I am so glad to hear that you are still able to get around a bit. Thank you so much for sharing that!  When he was first diagnosed, I just assumed he would be going down hill fast, but......nothing has changed much.  We finally have a support group in Boise now and that is a huge help.  All the parents have been through the exact same thing as us, although, unfortunately for them, their kids were put through a liver biopsy.  My son didn't have to go through that.  We are doing foster care now and want to adopt the child we currently have in our care.  He is our son's age, beautiful and kind.  It brings a lot of peace to me knowing that my son might have someone to go through school with and a brother his age for life.  We will know soon if this child will become available for adoption.

My son has to have a surgery on the 21st - tonsilectomy.  If he didn't have moderate sleep apnea, I wouldn't have it done, but he is soooo tired all the time.  I have it in my head that the anesthesia is the kiss of death.  Dr. Tseng has reassured me that as long as the docs here avoid certain agents, that Zach should be fine.  I just have irrational worry!  Any feedback would be awesome!  Thanks!